Walking a Tightrope - as a next-of-kin to an adolescent or young adult with cancer facing eating difficulties

Title
Walking a tightrope – as a next-of-kin to an adolescent or young adult with cancer facing eating difficulties

Background
Eating difficulties; changes in taste, poor appetite, nausea and vomiting, cause reduced food intake and poor quality of life among adolescents and young adults (AYAs) with cancer. Therefore, eating support from next-of-kin is crucial. The purpose of this study was to explore next-of-kins´ lived experiences of eating support to AYAs with cancer when they are at home between high-emetogenic chemotherapy (HEC) sessions.
Methodology
In-depth interviews were conducted with 12 next-of-kin to AYAs (15-29 years old) diagnosed with oncological or haematological diseases treated with HEC and Danish speaking. Participants were recruited from three university hospital departments. Data analysis was guided by Van Manen's hermeneutic-phenomenological methodology.
Results
The essential meaning of the next-of-kin experiences is reflected in the overarching theme 'Using meals as an opportunity to take action' consisting of two subthemes: 'Being in a state of alertness focused on eating' and 'Walking a tightrope to maintain usual everyday life.'
Conclusion
Findings revealed that using meals as an opportunity to take action towards AYAs’ food intake involved existential feelings including fear of losing their loved ones. Next-of-kin experienced that providing support through and with food was their only avenue of action. However, this sparked feelings of frustration, powerlessness and a need for walking a tightrope to maintain usual everyday life. The study offers unique and thorough understandings relevant to clinical practice. Healthcare professionals that regularly communicate with next-of-kin and AYAs need to acknowledge next-of-kin as a crucial resource in AYA eating support when treatment is provided on an outpatient basis.